Tag Archives: ASCO 2010

Love and sustenance

I glimpsed my first lightning bugs/fireflies of the season last night. How magical are they? It’s easy to imagine a host of lantern bearing faeries in our backyard…

My scans were on Monday and I came this close to getting into a fistfight with a nurse. Kidding, of course; remember, I’m a pacifist and don’t wish to be accompanied by hospital security on my subsequent appointments.

I was, however, absolutely steamed. Generally the orders for my scans note that I forgo the oral contrast and that notation was missing. Anticipating confusion, I alerted the receptionist. Soon my name was called and a nurse attempted to give me two barium shakes. I explained (again) that I don’t take oral contrast and would she please contact either my oncologist or the nurse in charge of clinical trials to confirm this. She looked skeptical, but said she’d check. Twenty minutes passed, the very long line grew longer, and I began to worry that this confusion would bump me further and further back down the line. I again approached the desk, a phone call was made and the receptionist said “she’s bringing two shakes out for you now”. Sigh. Several minutes later a different nurse came out, bearing (you guessed it) two milkshakes.

I (carefully this time) repeated that I do not take contrast, and had not in fact taken contrast for well over a year. The nurse said that she had spoken to the radiologist who very much wanted me to drink the contrast (just drink the damn koolaid!).

But he didn’t order the scans, I said.  He is the one who reads them, she countered, and then went on to explain how difficult it would be to obtain an accurate scan should I not drink the contrast.

As I don’t want to devote this entire blog to the ensuing argument, I will condense.  She was stolid, but I was more stubborn yet. Back and forth we went, in the waiting room, in front of all the other patients. My own certainty, my experience (I am, after all, a frequent flyer), my pleas that she speak to not the radiologist, but rather my oncologist or the clinical trial nurse, were all ignored. I finally said that perhaps I just wouldn’t be having a scan on that particular day. She left the room, I made the phone call I had requested myself, and within minutes I was called for my scans; no oral contrast (no apology either, although I had fantasized that perhaps one might be offered).

When my clinical trial team agreed that I could skip the oral contrast (I still receive intravenous contrast), it was a small but important victory for me. Of all the potentially uncomfortable procedures that are part of my treatment for cancer, drinking those barium ‘milkshakes’ every two months was, well, certainly one of the most difficult for me to swallow. I have an incredibly strong gag reflex and it was just something I had come to dread.

Needless to say, I was not able to enter that soothing zone I prefer in preparation for a scan. Nonetheless, as I lay on the table I did my best to envision clean, clear lungs. And then Jemesii (who had joined me in Boston) and I went over to Newbury Street and had a martini. Calm restored.

On to other things. A bit more about ASCO. GRACE, Global Resource for Advancing Cancer Education, has an informative posting about Crizotinib by Dr. Jack West, who was in attendance at the conference. Click here for a link to his post.

And now, what about that title? Occasionally someone will ask what sustains me; what gives me strength and keeps me moving forward. I know that for a lot of people, the answer to that question would be their faith. Pas moi, my friends.

I am an atheist. As a child I went to Sunday School regularly and even had a plastic framed print of Jesus in my room (I thought he was cute). Around the age of ten or eleven, I really began to pay attention to the words of the sermons as well as the hymns, and asked a lot of questions. By my late teens I had decided that for me there was no God.

Some people have a rather dark view of atheism, and confuse the definition, disbelief in a deity, with a lack of belief in anything. Not true. I believe in many things. First and foremost, love. It goes without saying (but I love to say it!) that I love life. I also love love.  And I believe in love. I feel that it’s one of the coolest tricks we humans can do. And talk about magic; perhaps it is the only thing in the universe (I may stand to be corrected by you physicists) that the more you give, the more you get.

So that is what sustains me. The love of life, my family and my friends. And, as I choose to believe that everyone is essentially good, I love all those people I’ve not met yet.

That has been one of the very best aspects of life and breath for me:   through their comments, many people have joined hearts and hands, and by doing so a community has been created. A sustainable community of love, caring and understanding. That’s a beautiful thing.

Peter spreads some love around

Reports from ASCO, 2010

The annual meeting of ASCO (American Society of Clinical Oncologists) is this weekend, and Crizotinib is attracting some attention. Today the plenary session will include accumulated data from the PF-02341066 trial and already there are several online articles in which Crizotinib is discussed.

Medpage has a video interview with the PI (Principal Investigator) of the trial, Dr. Alice Shaw.  She is also my oncologist.

A reporter from Bloomberg Businessweek spoke to me some weeks ago, and today there is an online story about Crizotinib which mentions some of my own experience on trial.

And the Sunday New York Times featured an article in today’s paper that references two promising new cancer therapies; Crizotinib is one of them.

It’s really very exciting to witness and to have been fortunate enough to have participated in what I hope is merely the groundswell of a new era in cancer treatment. That this innovation should also be happening in lung cancer, the cancer that kills more people than all other cancers and which has been notoriously difficult to treat at all but the earliest stages, well, hallelujah.

Next steps

Where to start?  It’s been a busy week.  On Thursday I went to Boston for allergy testing. I sleep on a natural latex mattress and had been using a pillow out of the same material. Several mornings in a row I awakened with a lot of swelling around my eyes and cheeks. After spending the night at a friend’s home and waking up minus the swelling, I returned to my own bed only to have it happen again. I replaced the pillow with one that wasn’t latex and  voila, no more swelling. Because I am in and out of a hospital so much, there was a chance that I had developed an allergy to latex. A prick test (yes, that’s what they call it) came back negative and I am awaiting a blood test, but it seems unlikely that my facial edema was related to latex. A minor medical mystery.

On Saturday, we had a belated birthday party for Peter, who turned thirteen in April. Seven of his buddies spent twenty four hours at our house. The air was thick with adolescent testosterone. When they weren’t eating they were out in the woods using each other as target practice with a battery of air soft guns. They all had on protective gear and were instructed to not shoot each other in the face and/or point blank, and, for the most part, they complied.

The entire air soft concept took me awhile to warm to. Despite my own access to not only cap guns (remember the smell of a freshly detonated cap?) but twenty two rifles as a child, as an adult and a pacifist, I have a general policy against weapons of any sort. Not easily thwarted,  a then-three-year-old August would chew his toast into the shape of a gun. Gradually I acknowledged that an attraction to things that shoot was somewhat intrinsic, and rather than banning firearms, I did my best to stress respect for life while allowing for fantasy play. These new guns do take it to another level. However, the boys had a great time and we all survived.

Sunday afternoon we partook of a more gentile activity, as Peter had a music recital. It was lovely to listen to a wide range of ages and abilities on a variety of instruments, including Peter Duff on guitar.

I turned in early that night, exhausted from the boy party, a big boy party (remember Go Dog Go and “a dog party, a big dog party”; I cut my reading teeth on that book). Yesterday morning I left the house at six a.m. to follow that familiar path down the highway to Boston. All the trees are almost completely leafed out now, and everything is so green. There was also a lot of roadkill. I saw opossum, fisher cat, coyote, deer, as well as some mangled black fur of unknown origin. It is a sad rite of spring;  young animals unaware of the great danger that crossing a highway poses.

At my  appointment, Alice (Dr. Shaw) laid out my treatment options in more detail. My next scan is in three weeks, and will help us to assess how quickly the cancer is developing. At some point I will need to undergo another biopsy, in order to learn more about why I have become resistant to the 1066 as well as to determine what the most appropriate therapy might be. If the pleural effusion has gained in volume, some of the fluid could be removed and analyzed. The presence of the fluid makes it viable to remove ‘live’ cancerous cells that could then be cultured.  Clinically that would be a real advantage, but from a therapeutic perspective a pleural effusion can be difficult to manage, so I am hopeful that such a scenario is not an option.  In lieu of that, I would likely have a wedge resection via VATS, as a punch biopsy would not procure enough material.

As I mentioned before, a HSP-90 inhibitor might be the next logical step.  HSP-90 is an acronym for Heat Shock Protein 90.  In healthy cells, HSP-90 acts in part as a chaperone that shields proteins from destruction. In cancerous cells, a number of proteins can be over expressed and inhibition of HSP-90 may induce apoptosis (cell death) through inhibition of growth signaling pathways. A phase II trial for HSP-90 is now enrolling patients with ALK mutations at MGH.

Alimta remains a fallback possibility and we will be keeping our eyes on a couple of ALK inhibitors in the pipeline (in addition to Ariad, Novartis has one in development).  My fingers are crossed.

In a couple of weeks, ASCO will have it’s annual meeting and this year the PF-02341066 trial results will be presented in a plenary session.  I am interested in seeing the newly published data, including the actual number of participants who, like myself, have relapsed.  I am also happy that the resulting exposure and publicity will make so many more oncologists and patients aware that people with NSCLC should be tested for mutations. It really is the dawning of a new era in cancer treatment.